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My life with Apert syndrome

My life with Apert syndrome

Life, in general, is not always an easy thing to live through or to handle. In John 16:33 Jesus said, “I have said these things to you, that in me you may have peace. In the world you will have tribulation. But take heart; I have overcome the world.” Sometimes we need this reminder more often than we think. 

My parents where not expecting to have another child. They already had two grown daughters (one was sixteen, the other was twenty one) when my mom went to the doctor and found out she was pregnant again. But the one thing that she and my dad were never told was that the son my mom was carrying would be born with Apert Syndrome, a congenital birth defect of the hands and face. When I was born, my forehead was pushed outward, my eyes and nose were pushed back into my head, and my fingers and toes were fused together so that I could not move them individually. Doctors told my parents that I had no skull opening and no room for my brain to grow and, therefore, I would eventually become brain dead.

The best plan, the doctors said, was to put me into an institution. On hearing this, my dad took a walk to pray and ask God what he should do. As he prayed, he heard the Holy Spirit say to him “be still.” Psalm 46:10 says “Be still, and know that I am God.” Sometimes in life, the plans that we have won’t always turn out the way we expect. We wonder at times where God is when the trials and tribulations come, and where He is when it hurts.

I have been in that place, and have asked why many times in my life. Why—if God is a loving and caring God—would he make me the way that he did? The greatest theological answer that I can come up with is simply this: I don’t know why. I do know, however, that regardless of what I have been through, God has a plan and a purpose for my life. Because of the way that I looked, I got bullied, picked on, and called names like monster and freak. But I realize that we live in a fallen world, and that when I was in my mother’s womb, God was creating and forming me. In the times when we don’t understand, He is asking us to be still and to trust Him.

At the age of thirteen, I gave my life to Christ, and accepted Him as my Lord and Savior.  There were times when I felt like giving up. There were times when the enemy would tell me that I wasn’t going to make it, and that I should just end my life. Thankfully I didn’t listen to the enemy that we call Satan, and you don’t need to listen to him either. You need to know today that God has great plans and purposes for your life.

One of the other side effects of Apert Syndrome is a speech impediment, and I had to attend speech classes as a teenager. For the most part I hated it. At the time, I felt like it was a waste of time, and felt like my speech impediment was just a part of who I was. Looking back, although my speech isn’t perfect, that process did help to make my speech clearer and more understandable, and in the end I’m glad I went to those speech classes.

That’s sometimes the way we need to look at the trials and tribulations we face in life.  The trials and tribulations that we go through will eventually help us to understand what God’s plan and purpose is for our lives. We’ll look back and be able to confidently say that God was working and that the process was valuable. One of my favorite verses is Jeremiah 29:11, ‘“For I know the plans I have for you,” declares the Lord, “plans to prosper you, and not to harm you, plans to give you hope and a future.”’ God has plans, a hope and a future for you.

As I started to get ready to graduate from high school, I had to have a meeting to figure out what I would do after graduation. My high school history teacher told me that I wouldn’t make it in college. Regardless of what he said and believed, I persevered. I continued on to complete four years in a two-year community college and five years in a four-year Bible college, graduating with a degree in Youth Ministry from the University of Valley Forge.

Though those doors to youth ministry never opened, I kept praying and seeking God for what he wanted for my life. During that time God opened up the opportunity for me to give my testimony at Summerfest, an outreach event at Bellerose Assembly of God. Since that time I have been traveling around speaking at churches all across the country, telling my story and encouraging others that they, too, can make the life that God has given us the fullest it can be.

Know this today, regardless of what you are going through, that God has a plan and a purpose for your life. Take it from a kid who was supposed to be brain dead, the kid who has a speech impediment who now is a communicator for a living God.  Romans 8:28, says “And we know that for those who love God all things work together for good, for those who are called according to his purpose.”

I have chosen to let God use me, despite what my parents and I were told about the quality of my life and what I would be able to do.

Can’t isn’t in my vocabulary and it shouldn’t be in yours.  Since God has a plan for my life, He has a plan for yours as well.    

Dorsey Ross

is an ordained minister with the Assemblies of God. He has a bachelors degree in youth ministry. For the last 12 years, he has traveled around the country testifying of what God has done in his life. As someone with a disability, he enjoys sharing what he has been through, and how God has helped him to overcome the obstacles and the trials in his life.

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